Together, we are building what has never existed — a global, community-driven registry dedicated exclusively to understanding and improving MS outcomes for Black
communities across every continent.
The National African Americans with Multiple Sclerosis Registry (NAAMSR) was founded in 2020 to address a critical gap in multiple sclerosis (MS) research—the limited representation of African Americans in the data that shapes diagnosis, treatment, and outcomes. Established by leading neurologists and researchers committed to equity in science and care, NAAMSR has grown into a pioneering national registry dedicated to understanding how MS uniquely impacts African American communities. Through its work, NAAMSR has advanced awareness, informed clinical research, and helped drive more inclusive approaches to care by ensuring that lived experiences are reflected in the science.
NAAMSR’s contributions include multiple peer-reviewed publications and scientific presentations that have expanded understanding of disease patterns, progression, and outcomes in African American patients with MS. These publications have helped inform clinical decision-making, highlighted the importance of inclusive research design, and strengthened the evidence base needed to improve care and equity in neurology.
BICOMS represents the next chapter in the work begun by the National African Americans with Multiple Sclerosis Registry—expanding its foundation from data collection to deeper collaboration, research, and impact. Building on NAAMSR’s critical contributions to understanding MS in African American communities, BICOMS was created to advance this work through a national network of clinicians, researchers, and advocates committed to improving outcomes. By fostering collaboration, supporting high-impact research, and amplifying community engagement, BICOMS continues the mission of ensuring that science reflects the patients it serves—transforming insight into action and driving meaningful progress in MS care.
Higher risk of developing MS for Black women compared to white patients
More likely Black people with MS are to have higher disability scores than white patients
Average disability scores — African Americans vs. white patients
Risk of disability for Black women with relapsing MS vs. white women with the same diagnosis
of MS clinical trial participants are from minority populations
Black representation in MS trials — despite being 13.5% of the U.S. population
Black representation in pivotal trials with racial sub-analyses
MS published articles have ever focused specifically on Black people
The Black International Coalition of MS Research (BICOMS) is a global registry and research initiative advancing a more complete, data-driven understanding of multiple sclerosis (MS) in Black communities — from Africa to the Americas, Europe to the Caribbean.
Despite major advances in MS research, critical gaps remain in the data:
These are not just gaps in representation — they are gaps in evidence.
BICOMS is designed to change that. By building one of the first global datasets focused on Black individuals living with MS, BICOMS is generating the evidence needed to inform earlier diagnosis, more precise treatment strategies, and improved outcomes worldwide.
The only global MS registry built exclusively for and with Black communities
Africa, the Americas, Europe, the Caribbean — every diaspora, one unified voice
Research designed with us, not just about us — participants shape the science
No cost, no barriers — your participation is protected and secure
A patient registry is an organized system that collects health information from people who share a condition — in this case, multiple sclerosis. It gathers details like symptoms, diagnosis history, treatments, and how the disease progresses over time, directly from the people living it.
Unlike a single study with a start and end date, a registry grows continuously. Every person who joins adds another piece to a much larger picture — one researchers and clinicians use to understand patterns that no single doctor’s office could ever see alone.
Think of it this way: if a single patient’s medical chart is one page, a registry is the entire book — written collectively, over years, by thousands of people whose experiences would otherwise never be connected.
Researchers study patterns across thousands of participants to understand how MS develops, progresses, and responds to care.
Registries are ongoing. Participants can contribute updates over time, building a fuller picture of the disease as it evolves.
The contrast is not subtle. The gap between how MS has historically been studied and what BICOMS is building is the entire reason this registry had to exist.
Traditional MS Research
BICOMS
Focus
White-centered, U.S. and Europe-focused by default
Black-centered — globally inclusive across all continents
Representation
Less than 5% Black representation in trials
100% focused on Black MS experiences worldwide
Treatment Insights
Generic protocols based on white populations
Population-specific insights informing culturally competent care
Your Voice
Your story stays invisible in the data
Your voice drives international research and policy
Research Model
Researchers study on communities — without them
Community-driven — research designed with and for us
Scope
Fragmented national efforts with minimal coordination
First truly international Black MS research initiative
Every day BICOMS goes without reaching critical mass is another day the system has no reason to change. Here is what hangs in the balance.
If We Don’t Build This
If We Build This Together
Whether you were recently diagnosed or have been living with MS for years, your experience and voice matter. The BICOMS Registry was built by and for Black communities to ensure our stories shape the future of MS research and care. Below are answers to the most common questions from patients and care partners who are considering joining.
The Black International Coalition of Multiple Sclerosis Research (BICOMS) Registry is a patient-powered research registry dedicated to advancing our understanding of MS within Black communities worldwide. By collecting health information and lived experiences from Black individuals with MS and their care partners, BICOMS works to close critical gaps in MS research, improve access to care, and ensure that Black voices lead the science.
The registry is currently open to Black and African American individuals who have been diagnosed with Multiple Sclerosis (MS), including all MS types — relapsing-remitting, secondary progressive, primary progressive, and clinically isolated syndrome. At this time, care partners are not able to enroll themselves, but they are welcome to assist their loved one through the enrollment process. We hope to expand participation to care partners in the future.
Research has consistently shown that Black individuals with MS experience more aggressive disease progression, earlier disability, and greater barriers to care compared to other populations — yet they are severely underrepresented in clinical trials and research studies. BICOMS was founded to change that. By centering Black voices and experiences, we can generate the evidence needed to reduce disparities and improve outcomes for our community.
When you join, you will complete a series of online surveys covering topics such as your MS diagnosis and disease history, current symptoms and treatments, quality of life and daily functioning, access to care and healthcare experiences, and social and environmental factors that may affect your health. Surveys are designed to be completed at your own pace and typically take 20–40 minutes in total. Follow-up surveys may be sent periodically to track changes over time.
Your privacy is our top priority. Your personal identifying information (name, address, date of birth) is kept strictly confidential and is never shared in any reports or publications. Data shared with researchers is de-identified, meaning it cannot be traced back to you personally. Only the BICOMS research team has access to identifiable information, and all data is stored securely in compliance with federal privacy regulations (HIPAA).
At this time, care partners are not able to enroll themselves in the BICOMS Registry. However, care partners play a vital role and are warmly encouraged to help their loved one with MS complete the enrollment process. We recognize how important the care partner perspective is and hope to open direct enrollment to care partners in the future — stay connected through our newsletter for updates.
No. Your participation in the BICOMS Registry will never be shared with your insurance company, employer, or any commercial entity. Your registry data is used solely for research purposes aimed at improving care for Black individuals with MS.
Joining is simple and done entirely online. Visit the BICOMS website and click the “Join the Registry” button. You will be guided through an informed consent process, create a secure account, and begin your first survey. There is no in-person visit required.
No. Participation in the BICOMS Registry is completely free. You will never be charged to join, complete surveys, or access educational materials provided through the registry.
The initial enrollment and survey process takes approximately 20–40 minutes. After that, you may receive follow-up surveys periodically (e.g., every 6–12 months). You can complete surveys at any time that is convenient for you — from your computer, tablet, or smartphone.
Yes. Your participation is entirely voluntary. You may withdraw from the BICOMS Registry at any time, for any reason, without penalty or effect on your medical care. If you choose to withdraw, you may request that your data be removed from the registry.
While there is no direct payment for participation, registry members receive access to a monthly newsletter featuring MS education, information on clinical trials, treatment updates, and community resources. Most importantly, your participation directly contributes to research that can improve MS care for Black communities now and in the future.
Yes. Registry enrollment is currently limited to Black individuals with a diagnosis of MS confirmed by a neurologist or healthcare provider. If you are unsure whether your diagnosis qualifies, please contact our registry team for guidance. Care partners may assist their loved one in enrolling but cannot enroll as participants themselves at this time.
We recognize that Neuromyelitis Optica Spectrum Disorder (NMOSD) and Myelin Oligodendrocyte Glycoprotein Antibody-Associated Disease (MOGAD) are related neurological conditions that disproportionately affect Black individuals and share some features with MS. At this time, the BICOMS Registry is enrolling individuals with an MS diagnosis only. However, we are actively planning to expand the registry to include individuals with NMOSD and MOGAD in the future. We encourage you to sign up for our newsletter to be notified when enrollment opens for these conditions.
BICOMS is an international coalition. Black individuals with MS from across the globe are welcome to join the registry. Surveys are currently available in English; additional languages may be added over time.
If you have questions about the registry, eligibility, or how your data will be used, please email our registry team at info@bicoms.org. We are here to support you every step of the way.
The Black International Coalition of Multiple Sclerosis Research (BICOMS) Registry is a patient-powered, community-led research registry focused exclusively on Black individuals living with MS and their care partners. The registry collects patient-reported outcomes and lived experience data to advance health equity in MS research and care.
Black patients with MS experience a more aggressive disease course, faster disability accumulation, and greater barriers to equitable care, yet they remain significantly underrepresented in MS clinical research. By referring your Black patients to BICOMS, you help generate the evidence base needed to address these disparities, increase clinical trial diversity, and ultimately improve outcomes for your patients and the broader community.
Any licensed healthcare provider who sees patients with MS or suspected MS is welcome to engage with the BICOMS Registry. This includes neurologists, MS specialists, primary care physicians, nurse practitioners, physician assistants, and allied health professionals such as physical therapists, occupational therapists, and social workers.
Providers can refer patients directly to the BICOMS website, where patients complete enrollment online at their own convenience — no clinic visit or paperwork is required from your office. To request printable resources and brochures for your practice, please contact the registry team directly at info@bicoms.org.
Patients complete patient-reported outcome surveys covering MS diagnosis and disease history, symptom burden and functional status, current and prior MS treatments, quality of life and mental health, access to care experiences, and social determinants of health. Participation does not require providers to submit clinical records; all data is self-reported by the patient.
Patient privacy is foundational to BICOMS. All data is collected under informed consent, stored securely in HIPAA-compliant systems, and de-identified before being shared with any researcher. Patient names and personal identifiers are never disclosed in publications or reports. Only the core BICOMS research team has access to identifiable information.
Individual patient data within the BICOMS Registry is confidential and is not shared with treating providers in order to preserve patient privacy and encourage candid reporting. Aggregate, de-identified findings from the registry will be published and disseminated to the MS community — including treating providers — through research publications, webinars, and conference presentations.
No. Participation in the BICOMS Registry is entirely independent of clinical care. Enrollment does not alter treatment protocols, insurance coverage, or clinical visit schedules. Patients participate voluntarily in their own time and there is no obligation for the treating provider to do anything differently.
Yes. BICOMS actively welcomes collaboration with clinicians, researchers, and institutions who share our commitment to health equity in MS. Providers interested in becoming research collaborators, serving on advisory committees, or contributing to study design are encouraged to reach out to the BICOMS leadership team through the Provider Collaboration portal on the website.
BICOMS periodically hosts educational webinars and symposia that may carry CME credit. Providers are encouraged to sign up for the BICOMS provider newsletter to receive updates on upcoming educational events and CME opportunities related to MS health disparities and registry findings.
Institutions and practices interested in becoming formal BICOMS partner sites can contact the registry team at info@bicoms.org to discuss institutional enrollment, patient outreach strategies, and collaborative research opportunities. Becoming a partner site is an excellent way to demonstrate your commitment to health equity and to connect your patients with cutting-edge MS research.
Referring patients to BICOMS requires minimal provider time. A brief conversation with eligible patients about the registry and directing them to the BICOMS website is all that is needed. No forms, no additional documentation, and no follow-up visits are required from your office for registry participation.
Providers can subscribe to the BICOMS newsletter through the website to receive updates on registry milestones, published findings, clinical trial opportunities, and upcoming events. BICOMS findings will also be shared through peer-reviewed journals and major neurology conferences.
Learn more and join the registry at bicomsregistry.org
Every enrollment matters. Every provider who joins expands our reach. Every researcher who partners with us advances the evidence. This is how we change outcomes for Black people with MS — everywhere, for every generation that comes after us.
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